Position Summary:

ultraimpact – Make a difference for those who need it most

Patients are at the center of Ultragenyx’s mission to bring to market novel products for the treatment of rare and ultra-rare diseases. The Ultragenyx Patient Advocacy team works to make a difference by supporting patients, caregivers and patient groups and develop productive partnerships and facilitate dialogue with patient partners and patient advocacy organizations to further mutual interests. 

Engagement with patients and patient advocacy groups is a critical success factor for the discovery, development and approval of investigational therapeutic programs in rare and genetically defined diseases. 
Direct patient interaction is required throughout discovery and development to inform trial design and recruitment, and to develop the appropriate partnerships necessary to support the commercialization phase and effectively serve the patient community. Internally, the team is responsible for infusing the patient voice into the everyday operations of the company, informing corporate strategies and key decisions, and nurturing Ultragenyx’s resolute sense of urgency and patient-centric culture. 

The Patient Advocacy team partners closely with the clinical development, discovery, commercial, regulatory, and public affairs functions to inculcate patient insights into Ultragenyx's programs, decision-making and communications. 
The Summer Intern, Patient Advocacy will work with the team to monitor, assess, plan and/or execute patient advocacy strategies and tactics related to pre-clinical, clinical and commercial programs. This position will interface with the Patient Advocacy team and appropriate internal staff from multiple functions to help incorporate the patient perspective into program planning and contribute to successful implementation of patient insights and feedback.  

Please visit www.UltraRareAdvocacy.com to learn more about the Patient Advocacy team’s work and some of the ways we engage with and support patients, families and organizations throughout the rare disease community. Importantly, the Patient Advocacy team serves as a resource to patient communities in the therapeutic areas in which Ultragenyx is involved, as well as to the rare disease community more broadly.  

Work Model:

Remote: Officially documented as working full-time from home, with travel to Ultragenyx's offices or other locations on occasion as needed.

Responsibilities:

• Support strategic initiatives to gather patient insights and identify actionable opportunities to incorporate information into the development and execution of Ultragenyx programs and patient advocacy strategies
• Support development of patient advocacy campaigns across multiple programs and disease areas with a specific focus on patient focused drug development.
• Contribute to and support the development and execution of patient advocacy communication and educational strategies, plans and tactics.
• Support team with the development and dissemination of patient advocacy education and materials.
• Help to develop and manage patient advocacy database.
• Assist in identifying unmet needs and challenges of patient communities across multiple programs and disease areas
• Support team with the implementation, tracking and issuing of agreements and contracts

Requirements:

• Pursuing a Master’s degree in a relevant field of study (e.g., public policy, health policy, health related field (genetic counseling, nursing etc.), with minimum of one year completed, enrolled as a full-time student with plans to return to school in fall term
• Available to work 40 hours/week during normal business hours
• Flexible; adapts work style to meet organization needs
• Meticulous attention to detail
• Good verbal communication skills; Ability to write clearly and effectively
• Capable of completing assigned responsibilities and keeping manager informed of work status
• Ability to actively listen, understand others’ points of views and perspectives and have empathy for people impacted by difficult situations
• Ability to understand, apply and integrate insights
• Passionate about helping others and making a difference in the lives of patients
• Familiarity with or interest in the areas of patient-focused drug development, patient engagement, patient programs and/or patient advocacy in the non-profit or pharmaceutical industry preferred
• Familiarity with use and role of social media platforms such as Facebook in the fields of patient advocacy and patient education

U.S. Hourly Wage Range:

• $27.00 - $29.00 per hour. The estimated hourly range reflects an anticipated range for this position. The actual hourly wage offered will depend on the candidate’s school year/level.

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